Hero Stories: “With Just 7 Years to Live, I’m on a Mission to Inspire 10,000 People to Join the Stem Cell Donor Register"
Hero Stories is an original Medical Travel Compared blog series. It highlights the extraordinary work done by genuine heroes – people who have dedicated a part of their lives to helping others in need. This month, we interviewed Peter McCleave – he has a wife, two young children, and just 7 years left to live. Why? Because he’s been diagnosed with Myeloma, an incurable blood cancer. This piece shares his journey so far. You’ll learn about his true commitment to finding a donor - not only for himself, but for all those suffering from this aggressive disease. Read his story here…
In 2016, Peter trained for, and completed his biggest challenge to date – Iron Man Wales.
And for those of you that aren’t aware, this consists of a 2.4-mile swim, 112-mile bike ride, alongside a gruelling 26.2 mile run.
It was only upon finishing the challenge when he began to feel unwell.
“I just thought it was because of the exertion of the race, but it didn’t really clear for the next couple of days, so I went to the doctor”
Following some blood tests, he was immediately sent to hospital to be treated for pneumonia, sepsis and legionnaires.
In an instant, he’d gone from being near enough at the peak of his physical powers, to suddenly finding himself in hospital.
After 4 days being pumped with antibiotics he was discharged from hospital. But it wasn’t the end.
“There were a couple of things that followed which wouldn’t clear in the subsequent months so they did some x-rays and there was a shadow on my right lung, that they thought was some kind of scarring from the pneumonia, or maybe some fluid on the lung, but it wasn’t shifting.
“So after about three or four months of tracking it they did a scan. They just did it over the chest cavity area to see what was going on.
“I was very lucky in a sense as the radiographer spotted some lesions that shouldn’t have been there. They could see little pock marks, which is kind of like what you’d see for osteoporosis.
“So, they sent me for a full body scan and these lesions off the back of the full body scan were basically everywhere – on my skull, arms, legs. You think of a bone and name it, it was there.
“And that was obviously bad, my skeleton was weakening but they weren’t quite sure why.”
After a series of blood tests, it was only in March 2017 when Peter finally got an answer.
He had been diagnosed with Myeloma – an incurable cancer.
He was also given just 7 years to live.
“I’d never heard of Myeloma so it was a bit of a shock for me as I’d gone from literally being mega fit, doing all the iron man stuff, to being diagnosed with incurable blood cancer.
“So, in terms of pre-cursors of that – I remember feeling achy, tired and my head was a bit foggy at times, but I just put that down to a heavy training schedule day to day, and the doings and goings of life. There was nothing in isolation that made me think something was significantly wrong – but in hindsight the little triggers where there.”
It was in fact a year prior to undertaking the Iron Man challenge that the Myeloma was starting to mobilise without him knowing.
“I was lucky that I got it caught, but it was obviously not the expected diagnosis for someone at the age of 39 who had just done a triathlon. So I guess that, in a nutshell, was where it started, and brings us to where we are today.”
Today, Peter continues to live with Myeloma, but has instead channelled his diagnosis into something positive.
He has set up the 10000donors.com website to encourage people to sign up to become a stem cell donor, whilst sharing his story along the way.
Although Myeloma is incurable, a stem cell donor is the best chance for someone in this situation to prolong their life. It’s also a way to minimise the symptoms associated with the cancer.
Peter is yet to find a stem cell donor match for himself.
“The chances are quite slim in fairness, there are a number of different factors that tie into it, it’s beyond blood type, so there are a lot of genetic factors too, so I think the most likely person to be a match is a sibling, and I’ve got a brother but unfortunately he wasn’t a match for me.
“So then it breaks down into a sheer numbers game. So, as a white Caucasian male, I would have had the best chance of finding a match because there are more white Caucasians on the register; but unfortunately my family history is Macanese (Portuguese and Chinese) so when it comes down ethnic and minorities it is a much rarer thing to find.”
The real issue in finding a match is that there are too few people signed up to be a stem cell donor.
“I think in the UK only 2% of the population are signed up on the register so that in itself is not many, and globally there are 30 million, which sounds like quite a lot but it just isn’t when you think there are billions of people on the planet.
“So, on the one hand it is very, very difficult to find a match at the moment – but it gives really good scope for people trying to push the campaign like I am, to get more people signed up.”
And, Peter’s plan is to continue to push-on – spreading the word about 10000 Donors, to help those in need find a match.
“Right now it’s a numbers game. The more people that sign up, the greater the chance of finding a match for somebody else, and theoretically there should be a match for everybody. It’s just getting people signed up.”
Every 20 minutes someone is diagnosed with a form of blood cancer… so why don’t we hear more about it?
Speaking to Peter, I felt ignorant, as I had never heard of Myeloma before.
As a child, my close friend was diagnosed with Leukaemia, and luckily after a gruelling series of chemotherapy, he was luckily put in remission, and given the all clear a few years later.
But, this was the first time I’d really been introduced to a condition of this nature. And after speaking to Peter, it soon became clear that even up until after his diagnosis, he was still unfamiliar with the disease.
“When my doctor told me what was wrong with me, I asked if you could cure it with antibiotics as I’d never heard of it before. It’s one of those cancers that is becoming more and more prevalent but people just don’t know about it as it’s not really spoken about.
“Therefore, I’d say my goal isn’t just a question of getting people signed up. It’s also about making people more aware of what is going on – because if 1 in 2 people are getting diagnosed with a form of cancer in their lifetime, we need to know, and be aware of these things to try and stave it off before it hits.”
“So it’s been a real education for me, as I came into this completely blind. Never in a million years would I have put money on me getting this. But there you go, it’s just bad luck.”
Alongside Peter, his site, organisations such as DKMS, and even what you’re reading right this second – all exist to play their part in raising awareness.
Just speaking to someone about it can help towards increasing the register count. A conversation can go a long way…
What does becoming a stem cell donor entail?
In Peter’s words: “It’s dead easy, it’s free, it costs you nothing, it’s a cheek swab.”
I am now a registered stem cell donor, and can vouch for this. The process really is as simple as he says.
I received my kit in the post which contained three swabs and a ‘how to’ leaflet. I swabbed inside each cheek for a minute (applying a little pressure), alternating a cheek per swab.
Once they had dried I simply put them in the ‘free post’ envelope with the valid sticker, and posted it back to DKMS.
And now I await my donor card – such an easy task.
However, there is a specific criteria you must pass to register, prior to receiving your donation pack.
“And once you are on the register then that’s it, you can be called upon from anyone in the world to be a match for them,” Peter adds.
“It’s not like donating a kidney. When you lose a kidney – your kidney is gone.
“But with this, you have loads of these little stem cells, you have millions of them swimming around your blood every single second of every single day – and you can donate them and be none the wiser those things will grow back within a week or so.
“So, it’s life changing technology, but it costs so little – which is exactly the narrative I’m hoping people can engage with and understand.”
If you’re a match, you can read more about what the process entails here. But, it’s also worth bearing in mind that in a large proportion of cases, the likelihood is that you’ll need to donate your stem cells via your blood.
The benefit you can provide someone is life changing, for doing something that only costs you time.
However, if you aren’t eligible to register, helping to spread the word on how to register can too have such a huge impact!
Today Pete is on a mission to raise as much awareness as he can about Myeloma and the ‘10000 donors’ site as a whole.
He’s doing presentations, attending events and networking as much as he can to get people to spread the work, and if they can, sign up to register as a stem cell donor.
“It’s not even about me anymore,” he adds.
“The story is that it’s a plea for getting people engaged. And, when people fully understand then it should take on a life of its own. That’s my hope.”
He continues to work very closely with charities such as DKMS and Myeloma UK to make a positive change.
“I have had lots of people reach out after the campaign has gone live and I’ve made some fantastic connections and friends along the way, who are going through a similar sort of thing.
“But my belief is if you just do something productive and make the best of the situation, then some good things could come off the back of it.”
How you can help make a difference…
Pete’s goal is simple to understand – raise as much awareness as possible about Myeloma as a condition thousands of people live with every day worldwide.
So, if you can’t register via 10000donors to become a stem cell donor, spreading the word about Pete’s story and how simple it is to sign-up, will do so much more than you know.
Even if you just mention it to one more person – it could potentially make an enormous difference.
If you want to continue following Peter’s journey on social media, you can find his profile here.
Another way you could make a difference is by supporting the work of charities like Anthony Nolan.
Anthony Nolan is a remarkable organisation that seeks to improve the lives of people in need of stem cell transplant.
They created the video below to show the world Pete’s story – and demonstrate how your simple stem cell donation could be the perfect gift for somebody this Christmas…